Need advice from the veterans ... when will the pain get better?

[tommyboy]

I need some advice please...

I am 19 months post lasik and was diagnosed with corneal neuralgia and dry eye syndrome in september of 2012.

I went on disability in September for 6 months. In september I was not in a good place, pain wise and physiologically. I tried to take my life and spent a couple weeks in the hospital. I have been on serum drops (20%), 8 times per day for the past 8 months and have grown 30% of my nerves back, based on a confocal exam in Boston.

Today, physiologically - I am 10 times better. For some reason, I am no longer sad and depressed. I do take some medications for that (Remeron and Viibyd) and see a psychologist every month and a therapist every week and do acupuncture every other week. I also see a pain doctor who just recently started me on lyrica. I have tried gabapentin in the past (all the way up to 3,600mg) with no luck. But, am willing to try this new drug. I am also on oxycodone (15mg) 2 to 3 times a day, which does seem to help a little bit - it takes my pain down from a 6 or 7 to about a 3 or 4, but never eliminates the pain.

I went back to work in mid february - as an IT leader - and need to look at the computer screen most of the day. I did well - for the first 6 weeks (pain was at a 3/4) and then hit a "flare up" (towards the end of march) that I am still in.

I saw my doctor (dr. pedram hamrah) in boston at the end of march and he told me I lost some nerves (damage to computer screen) and grew some new ones back - at I am still at 30% regrowth of nerves (as I was in december). He said I need to wear my moisture chamber goggles while on the computer, reading and driving. So I have been wearing them most of the waking hours since then.

He told me I could continue to work as long as I am wearing my goggles and that I am not harming my eyes nor hindering any additional recovery. But, I am NOT sure I BELIEVE him ... and wanted to get some help from some of the veterans that have been through this and/or are still going through this...

Why do my eyes still hurt most of the time while I am awake? I wear my goggles almost all of the time, and they do not seem to provide any type of relief... I am wearing the onion goggles now, pushed tight on my face - and they are fogging up now - but why do I get no real relief?

What am I doing wrong?

I asked my doctor if I should stop working altogether and go on long term disability and he he told me he could not make "life decisions" for me. And said to give it another month...

I am also changing my diet as prescribed by my pain doctor to try to reduce overall inflammation (less gluten, no red meat, no "white" foods, no "processed" foods, etc.)

Am I being unrealistic that I can actually go back to work and have a "normal" life??? I actually enjoy my job, but fear that working on my computer simply is hurting/harming my eyes.

So, veterans of pain - what am I missing? What am I doing wrong? What is your advice?

Additionally - I do try to work out a couple times a week as well and am looking to start yoga.

Sorry for the long, random, post...

Lastly - today is Sunday. I took off of work thursday and friday and have not really used the computer. I have not read anything, nor watched tv. I put in refresh PM last night - got a great night sleep. Woke around 8ish. Had a healthy breakfast, worked out for 40 minutes. And around 10:30 was at a level 5 pain, then a level 7 pain at 11:00am... I took 15 mg of oxycodone at 10:20 - which seems to be helping. I am somewhere around a 4/5 now and it is 11:30. I was in so much pain, that I was not able to attend my daughter's soccer game today - which I really wanted to go to... the pain came on rather quickly as it does some days. Did the the same thing last sunday while at church.

On a positive note - I do feel better "emotionally" then in september. I am not really sad, nor depressed any more - and I do not think about taking my life any more. I feel as if I am just destined for a life of pain and need to deal with it...

Any suggestions, comments, advice would greatly be appreciated.

Cheers,
Tom

[Rebecca Petris]

Tommyboy,

Some random thoughts....

1)

He told me I could continue to work as long as I am wearing my goggles and that I am not harming my eyes nor hindering any additional recovery. But, I am NOT sure I BELIEVE him

Totally get this. It's really hard to mentally separate pain from harm, especially with the eyes - even when we all know at some theoretical level that there IS such a dichotomy in a lot of eye pain cases.

Now this is obviously just my own personal amateur opinion but I think you should believe him. When all's said & done, in your situation I don't really think it's at all likely that using the computer is harming you physiologically - except in a very roundabout and theoretical way, that is, to the extent that by increasing pain, it can potentially feed back into the whole depression loop which throws the whole body out of whack - speaking of which I'm so, so pleased to hear how well you're doing in that regard.

2) The only thing worse than the ups and downs at the stage you're in is the ups and downs at the acute stage you've alraedy been through. In the first two years or so of these relatively extreme cases, the battle for perspective is so hard. Am I getting better, am I getting worse, am I never likely to get any better, what does this latest flare-up mean, etc. Absolutely nerve-wracking because they mess with any concept of a vision of the future which we all need. Just as soon as you think you 'get' where you are, it all seems to change. But what I think a lot of veterans here would echo from their experience is that at some point this stuff seems to settle into its place, e.g. a flare-up is a flare-up and while I still hate it, I know more or less what to expect, I'm more or less prepared for it and I'll get through it.

3)

Today, physiologically - I am 10 times better.

I'd print that out and put it up on the mirror

Last summer, would you have believed it if someone told you you'd be typing something like that?

Wish I could tell you when the pain will get better. I have an optometrist friend, quite astute, who after seeing a lot of these in his office basically prepares the ones in hard places for a 2 year path. At first I thought that was awfully depressing to hear (for someone, say, 6 months into it) but at the same time I couldn't help thinking of all the people for whom that had been true. Not that the pain switched off at 2 years, but that by 2 years things were substantially better all around AND for whatever residual issues they had, they felt well equipped to deal with them. There's always going to be exceptions... most of whom naturally congregate here, which makes it even harder to get a balanced view of what's likely.

Anyway that's my 2 cents on a Monday morning. I'm so glad you're still posting. I find your story - as it continues to develop - really inspirational and it gives me hope for others in hard places.

[soaps]

Tommy Im not sure if Im a veteran at only 1year post . but in terms of work this was a hard decision for me. But eventually i had to take a break i wasnt improving and work was a struggle. i spend a month in bed and now pain is very manageable and i can identify triggers. Im a hermit but pain is better and i can have a chat whereas before i couldn't concentrate due pain. applying for long term disability isn't final. And a think of it as a break not the end of ur career. some asked me "r u taking a permanent break?" which made smile

perhaps now that u r better a break will b more beneficial?
For me taking a break allowed me to heal and just relax.
Think about wat ur body needs and chat with ur family. sometimes they can see our stress which we can't .

[tommyboy]

Rebecca - thanks so much for your reply - you have a "gift" with words. I did make a mistake in my post ... I wrote I was 10 times better physiologically and I meant to write I was better psychologically (in the head). In terms of overall health, I guess I am fine aside from the fact that I lost 18 pounds and have not been able to put the weight back on ... I know most people "desire" that ... but for me, I only weigh 119 pounds and needed a lot of new pants which my beautiful wife got for me

At this point I am just trying to figure out why I am in so much pain and what to do about it. For example, this morning I woke up around 7:20, eyes felt decent - they tear in the morning (every morning) - which feels nice for the 5 minutes that lasts. At 8:20 my pain was at a 2. At 8:40 the pain went to a 5, and then 10 minutes later up to a 7 - this was happening as I was driving into work. I took 15mg of oxycodone at 8:40 which brought my pain back down to somewhere around a 4 or a 5.

This morning I was wearing my brand new Wiley-x air-rage prescription sunglasses, which I just got yesterday. And they were fogging up, so my eyes were definitely moist.

So, I guess I just fail to understand - WHY am I still in pain. I just don't get it ... If my eyes are not dry and I am taking care of them, my am I still in this much pain??? A level 7 pain almost has me in tears and makes me want to throw-up … but, my pain doctor told me to not let emotions get to me as that will make the pain worse, so I do exercise breathing techniques and fight back the tears (which I managed to do this morning).

I did see my pain doctor last week, who actually spent more than an hour with me. And she was not pushing pain meds, she spent 15 minutes on breathing exercises and 40 minutes on diet. I am changing my diet to reduce inflammation. My wife is arranging a nutritionist to work with us for the next 6 months – so I will let folks know how that works out at some point.

Lastly, I am no longer really thinking about (as I did in the past), this has ruined my life, and what will the next 3 months look like or the next 6 months and will my nerves grow back and all those "worries" I had months ago. For some reason, I just am able to "accept" what has happened to me and my family.

At this point I am on a "mission" to get out of pain and am seeking any guidance, recommendations, comments, feedback or anything else that anyone is willing to share with me.

Thanks again,
Tom

[tommyboy]

Soaps - thanks for your reply and recommendation. I was out of work on short term disability for 6 months. So I was on a very long break... at this point I am trying to work as I enjoy my job, for the most part and it gives me something to do - a very needed distraction from the pain. However, I just do not know if the continued use of the computer is hindering my recovery or making my pain worse.

Good luck to you and thanks again for your reply.

[bakunin]

Hi tommy,

Rebecca really has a gift with words. And I agree with her that your story is inspirational. I think everyone here wish you all the best and get very happy when you bring us news of improvement.

I'm not a veteran, i have DES for 18 months, and perhaps my case is a delayed post-lasik problem (since I did lasik in 2005 and my onset was in 2011).

About the moisture chamber glasses. When mine is fogging up, usually my eyes are bad: a) my tears are evaporating too fast so they fog up; or b) I'm wetting the foam because the weather is very dry and/or my eyes are killing me etc. So in my case fogging up is a sign that my eyes are bad, not that they shouldn't be bad. In my case, when my eyes are bad they burn like hell even with goggles. Better with goggles than without them, but what I feel is like the pain/burn come more from inside than from outside, I mean, it has to do more with something happening in my body than with the enviroment. I feel like my eyes are inflammed, despite there aren't visual signs of inflamation. And when I feel that inflamation, even in the most humid place my eyes will not be fine.
Maybe some neuropathy.. I'm trying diet changes either. No gluten, no dairy, avoid processed foods etc. I think I'm having less flare ups, but I can tell for sure if its working before the winter.

best wishes

[soaps]

Tommy Im sure u have adressed this already but just in case are there any products which may b ritating ur eyes?
I felt a great decrease in pain wen i switched to sls free, hypoallergic products iincluding soap, deodorant, eye wipes etc. Even though i have never had an allergy in my life and thougt it was all nonsense but was desperate.

I agree with bakunin about diet and i also avoid sugar. This will affect weight loss so great to have nutritionist on board.

Sounds like u have a great plan and excellent wife!

[tommyboy]

THANKS Soaps.... and THANKS to the others that have PMed me

I just wrote a new thread this morning under the "Introduce yourself" forum, called "My Magic Wand" ...

[NotADryEye]

So, I guess I just fail to understand - WHY am I still in pain. I just don't get it ... If my eyes are not dry and I am taking care of them, my am I still in this much pain??? A level 7 pain almost has me in tears and makes me want to throw-up … but, my pain doctor told me to not let emotions get to me as that will make the pain worse, so I do exercise breathing techniques and fight back the tears (which I managed to do this morning).

At this point I am on a "mission" to get out of pain and am seeking any guidance, recommendations, comments, feedback or anything else that anyone is willing to share with me.

Tommyboy - you may have something else going on in your eyes besides just dryness. A level 7 pain that is making you throw up sounds significant. Pain meds will only mask the condition. I recall when I had conjunctovochalasis. I would ask doctors if they would take my eyes out. Of course no one would but they also had no solution or even diagnosis for the pain. At one point I was put on lyrica. Sure it helped the pain, but life on Lyrica was not that great. That's when suicidal thoughts started. So you might need more agressive intervention, surgery, etc. If you can swing it, get in touch with Dr. ******. I'm lucky to live close enough to his office that it's only a long drive away. But he saved my life, literally, and if you're looking for real solutions I know he can offer them. Best of luck. Keep us posted.

[tommyboy]

Thanks NotADryeEye... been there already as well in terms of wanting to take my eyes out, in fact I contemplated just doing it with a knife myself - which I came very close to doing, seriously. I unfortunately used the knife elsewhere on my body at the time... I am currently on lyrica, 150 mg and my pain doctor is pushing 50 mg each week, not sure what the final does will be. I did go all the way up to 3,600mg on gabapentin - which did absolutely nothing for me at all - zero. Where is Dr. ****** and can I have his contact information please?

[NotADryEye]

Thanks NotADryeEye... been there already as well in terms of wanting to take my eyes out, in fact I contemplated just doing it with a knife myself - which I came very close to doing, seriously. I unfortunately used the knife elsewhere on my body at the time... I am currently on lyrica, 150 mg and my pain doctor is pushing 50 mg each week, not sure what the final does will be. I did go all the way up to 3,600mg on gabapentin - which did absolutely nothing for me at all - zero. Where is Dr. ****** and can I have his contact information please?

Hang in there!!!!!!!!!
Dr. ****** contact Info below:
813-875-0000
3001 Swann Ave
Tampa, FL 33609
www.dr******.com
If you have questions he'll answer them even before your appointment.

[tommyboy]

Thanks for the contact info.....

[fiddle]

Tommyboy I don't consider myself a veteran by any means on this site but I can tell that I'm 2 and half years post lasik and I don't know what I've done or not done that's helped except to say time has been a big part of my healing and this site of course. My eyes are still dry and I still have my regimen that I do everyday but the main difference is I don't think about it all the time anymore, it's not my first thought when I wake up anymore nor my last thought before I fall asleep (and yes I sleep now and that took months to return). It's a road for sure and everyone's is different but I realized that one day it wasn't the only thing I thought about anymore.
Hope that helps a bit,
fiddle